The false dichotomy of legalising assisted dying

The Terminally Ill Adults (End of Life) Bill seems to have given rise to a false dichotomy in public discourse. That dichotomy is that people are either in favour of the proposed legislation, or they are against assisted dying altogether. I strongly disagree with this assertion, though I must admit it doesn’t help that there is no alternative legislation being discussed, so if the Terminally Ill Adults (End of Life) Bill is not passed, then assisted dying will remain illegal.

Personally, I am completely neutral about assisted dying. I can’t imagine it being something I’d ever entertain for myself, but that doesn’t mean I think it should or shouldn’t be legalised. However, I don’t personally believe that the Terminally Ill Adults (End of Life) Bill is up to scratch; if we’re going to legalise assisted dying, then we must make sure that the relevant legislation is as robust as it can be, to ensure people can die as well as possible.

Whilst I have lots of little pernickety issues with the bill, there are three bigger issues that I have, and it is these three I want to talk about in this post:

Issue 1: mental capacity

The Mental Capacity Act 2005 (which I’ll refer to as the MCA going forward, unless I’m quoting legislation) is a wondrous piece of legislation. In fact, as far as legislation goes, it’s definitely up there as one of my all time favourites. I might order pom-poms to create a cheerleading routine…‘Give me an M! Give me a C! Give me an A! M-C-A!’. This piece of legislation introduced lasting powers of attorney, advance decisions to refuse treatment, and many other measures that form parts of everyday life for many people I’ve supported over the years.

The Terminally Ill Adults (End of Life) Bill mentions the MCA once, in passing. In Section 3, it says ‘In this Act, references to a person having capacity are to be read in accordance with the Mental Capacity Act 2005’. That’s it.

This isn’t particularly helpful, for two main reasons: it’s not clear if references to capacity within the proposed legislation are actually to be read in accordance with the MCA; and it isn’t clear if the person must be able to retain their mental capacity to decide to request assisted dying for the entire verification process (i.e. getting two medical approvals and High Court agreement).

First issue first: mental capacity, historically, was thought of as a very black-and-white thing; you either had mental capacity or you didn’t. But that is absolutely not the case. The MCA introduces provisions for someone to make decisions in advance, and to appoint people to make decisions on their behalf, should they lose the mental capacity to make decisions.

The Terminally Ill Adults (End of Life) Bill simply says, in Section 1, that ‘a terminally ill person who has the capacity to make a decision to end their own life (see Section 3) may, on request, be provided with assistance to end their own life in accordance with Sections 5 to 22’. If I didn’t know anything about the MCA, I’d assume that it means that the person themselves must make the decision to end of their own life directly and at that moment of declaration; but if I were to read it ‘in accordance with’ the MCA, then I might assume that someone can tell a lasting power of attorney that they want them to trigger the process of assisted dying on the person’s behalf if they’re in the final 6 months of life and don’t have the capacity to make that decision themselves at that specific time. I might also assume that someone can make a decision to end their own life in advance of such a time when they might otherwise have this discussion – in the same way that I can refuse life-sustaining treatment in particular circumstances through an Advance Decision to Refuse Treatment (ADRT).

Mental capacity is a nebulous concept, and it would be impossible for me to define it in a singular blog post, including all of its subtle nuances. But it can be fluctuating; we may lose capacity in certain contexts, and then regain it later on. It’s the whole concept of having sex when you’re drunk; large alcohol intake might mean we temporarily lose the mental capacity to consent to sex, but we will regain that capacity to consent to sex when we sober up.

In the context of the end of life, mental capacity can be fluctuating for a number of reasons, and can be a very normal part of the normal dying process. And again, it might be fluctuating; we might have mental capacity to make decisions if we’ve had a quiet, relaxed day, but might not have it if we’ve had a visit from loved ones that has tired us out. Medication can also impair mental capacity – it’s why you’re not supposed to be on your own for 24hrs following general anaesthetic.

The Terminally Ill Adults (End of Life) Bill doesn’t make it clear if the person must have capacity just to initiate the first declaration as described in Section 5, or if they must retain capacity throughout the entire decision process. Presumably, the latter is applicable, as the person must themselves administer the substance to end their life, and so presumably would need the mental capacity to make the decision to administer said substance. But if they are temporarily lacking capacity on the day that the High Court has decided it wants to question them (perhaps because they’re trialling a new medication), does that mean that the entire process will be refused? And by extension, will a refusal in that instance be classed as discrimination against a disability under the Equality Act 2010?

Issue 2: timescales and resources

In order to be deemed appropriate for assisted dying, the person must be reasonably thought of as being in the final 6 months of life. This must be agreed by the co-ordinating doctor and the independent doctor, and an application to the High Court for a declaration that all criteria in the legislation are satisfactorily met must be granted (after questioning the co-ordinating doctor, and possibly the person and the independent doctor if felt necessary).

According to an article by ACSO, published a year and a day ago, the ‘mean time for small claims and multi/fast track claims to go to trial are 55.6 weeks and 76.4 weeks respectively, well above the 38.1 weeks and 59.4 weeks experienced in 2019 before the pandemic’. It is not, therefore, unreasonable to believe that, whilst the actual declarations from the High Court may not take so long, the process of questioning the co-ordinating doctor and any other relevant people may take within the region of these timeframes. When combined with the timeframe for the first declaration, the co-ordinating doctor’s assessment, and the independent doctor’s assessment, people may be looking at lengthy periods of time between making the first declaration, and receiving the substance to actually end their life. (The ACSO article: https://acso.org.uk/news/202312/record-court-waiting-times-mean-uk-has-third-rate-justice-system)

Just to remind you that the person making the request for assisted dying must be thought of as having, at most, 26 weeks of life remaining.

In an ideal world, 6 months would be plenty. And I’m not advocating for lengthening the period in which the person must be in order to make their first declaration (i.e. saying they they must be in the last year of life etc); as I said at the beginning of this post, I’m neutral on the actual concept of assisted dying. But can Government guarantee that it will inject enough money into both primary healthcare (GPs etc) and into the justice system in order to better-resource both, and speed up wait times?

Issue 3: safeguards

Kim Leadbetter MP, who is the sponsor of this proposed Bill, has tried to reassure people that it contains some of the toughest safeguards of any such Bill on Earth, because it necessitates the approval of the High Court.

Sadly, that is more or less the only safeguard the Bill actually includes. The Care Act 2014 is another wondrous piece of legislation, and is up there with the MCA (though not quite on the top podium) in my own personal ranking of legislation. Within it, it talks extensively abuse and safeguards. It is quite a holistic piece of legislation. The Terminally Ill Adults (End of Life) Bill doesn’t mention it at all.

What this Bill does do, however, is make it clear that people must make the decision to end their own lives without having been ‘coerced or pressured by any other person into making it’. But given that the Bill then doesn’t actually define what it means by ‘coerced or pressured’, it’s not much of a safeguard.

For example, the Alzheimer’s Society released a highly controversial ad earlier this year, which told people with dementia that they are going to ‘die again and again and again’, and showed a funeral scene in which a very distressed son delivers a eulogy to his late mother’s dementia (I might even write a separate blog post going through my issues with this advert, but I don’t want to detract away from this important conversation). Could seeing this distressed son and imagining one of our loved ones being in the same position, or the thought of dying ‘again and again and again’ be considered as coercion or pressure? If not, why not? The legislation doesn’t provide any guidelines.

The co-ordinating and independent doctors must also ascertain whether, in their opinions, the person who made the first declaration did so ‘voluntarily and has not been coerced or pressured by any other person into making it’ (in sections 7(2)(g) and 8(2)(e)). I really struggle to see how on Earth either doctor can confidently assess and ascertain if this is the case or not. Section 26 says that, if someone coerces or pressures the person into making a declaration and/or to administer the substance to end the person’s life, then they commit an offence. But again, how is this measurable? If a daughter tells a CHC assessor that caring for her terminally ill mother is ‘really tiring because I have to juggle bits in my life too’, might that be classed as coercion?

Overall, I remain neutral on the topic of legalising assisted dying. It’s not for me, but that doesn’t mean I don’t think it should be for everyone: if it’s passed, it’s passed; if it’s not, it’s not. I’ll continue working hard to support people to have as best a death as they can regardless of whether or not the Bill passes its third reading and then goes through the House of Lords. Palliative care needs proper funding, hospices can’t be denied the funding they need to carry out that incredible work they do (I really would suggest you take some time to look at what hospices around the country are doing – KEMP Hospice, for example, is using Minecraft as a way to empower children and young adults to express their emotions relating to loss, which I think is amazing). That remains the case whether assisted dying is legalised or not.

But I really do not feel that the Terminally Ill Adults (End of Life) Bill is fit for purpose in its current state. I hope that, as the readings go on and debate continues, that changes will be made that make it a piece of legislation worthy of a good assisted death.

That, however, is only what I feel about it. You might think I've got the wrong end of the stick, or that I'm making a mountain out of a molehill, or you may think I'm absolutely correct - perhaps you're completely indifferent, or feel something else entirely. I'd love to hear what you have to say!